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AIH - Cellcept Anyone??

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Posted 1/8/2010 3:43 AM (GMT 0)
I'm 34 and was diagnosed with AIH 4 1/2 years ago.  Initially I was on Prednisone then Imuran until I started having extreme side effects.  Now I'm on Cellcept.  Has anyone been on this?  If so, what are you thoughts???

Also, do you know of anyone who's had a transplant and the AIH has gone away after??

Posted 1/8/2010 4:40 AM (GMT 0)

Hi, ladyj, and welcome to the forum!  We do have some members here with AIH and I know a couple have been on CellCept.  Hopefully, they will see your post and respond.

Hugs,

Connie

Posted 1/8/2010 1:54 PM (GMT 0)
Hi ladyj

I am new to this forum - but have had AIH for just over 10 years.

I have been taking cellcept for just about 7 years now. I started out on pred then tried Imuran (violent reaction to that!) and my hep started me on cellcept. I soon came off the pred as it tends to blow my mind and have been maintained on Cellcept alone apart from one flare which was controlled by temporarily adding budesonide (trade name of the med is Budenofalk here in the UK).

I have found cellcept great. My only side effect is a tendency to have to dash to the bathroom but I control that with Imodium.

Other than that I am well. I work in a busy job, enjoy my vacations and generally forget about the AIH most of the time I am glad to say. I have blood tests and see my hep every 6 months and thats about it.

I know several people with AIH on cellcept (there is an AIH forum I visit) - and most get on with it very well. One person had to stop it because it had an impact on their blood count but most really like it. Its 2 main drawbacks are that it cant be taken in pregnancy (not a problem for me at my age I hasten to add!) and is expensive. Our meds are free (or practically free - I pay £100 thats about $160 for all my meds for a year) here in the UK as part of our health service so that last point is luckily not an issue for me but can be for others.

I know 1 or 2 people who have had a trasnplant because of AIH. In neither of them has the AIH returned although it is always a risk.

Amy

Posted 1/8/2010 5:20 PM (GMT 0)

Hi Ladyj,

I had started my AIH journey with pred and CellCept as I was pretty ill and Imuran takes 2 months to kick in.  I was switched to Imuran a couple of months later.  My hep wanted me on Imuran as it has more long term data and he won't be taking me off all meds (I've been off pred since Dec '08).  While I was on the CellCept, I didn't have any problems that I could tell.  I was in the midst of all the steroid side effects but didn't have anything unexpected.  How's it going for you?

AIH is not expected to 'go away' post transplant as it isn't a liver issue.  It's an autoimmune disease that attacks the liver.  Since you don't get to transplant your immune system, you always have a risk for a flare.  The transplant meds are similar/the same as our current meds (plus a few more) so that keeps you immunosuppressed and less likely to have a flare post transplant.  Why are you worried about a transplant?  Has your doc put you on a list?  It is possible to have regeneration even with a cirrhotic liver as long as there is enough healthy liver left.  There are a few people on the Yahoo group who were told they needed transplant and still haven't as they are responding to the meds.  Are you in remission now?  Are you still on pred too?

Posted 1/8/2010 6:44 PM (GMT 0)

Hi, Amyuk.  I just wanted to welcome you to the forum.  As you can see, we have a number of members with AIH.  Thank you for sharing your experience.

Hugs,

Connie

Posted 1/10/2010 5:04 PM (GMT 0)
I received a new liver a little over 5 months ago. I'm taking Prograf 3 mg. a day and Cellcept 2,000 mg. a day. I have slight trembling in my hands at times, though you'd have to be looking for it to see it. My hair has been falling out for the past 10 weeks, but I feel great and everything seems to be working. The side effects have been minor and I'm not sure which anti-rejection med (maybe both) is causing them. The alternative is not having a working liver. There is no choice, kind of like whether to accept a transplant, where the operation might kill you, or a slow death, if you don't. Read the labels on your meds, they sound horrendous, but then so are the ones for most common over-the-counter drugs. Take the meds. **David**
Posted 1/16/2010 10:20 PM (GMT 0)

Amy  My husband has his transplant 8/3/09.  He is still taking 500 mg Cellcept twice a day.  The only problem he is having with the Cellcept is joint pain.  Its really hard getting out of a chair sometimes but like Dave his attitude is better joint pain then in liver failure.  He had his transplant at Vanderbilt and they have told him he may be able to stop taking the Cellcept.  Until then we are doing exactly with the Dr. say. 

JoAnn

Posted 1/19/2010 11:32 PM (GMT 0)
I was dx with AIH in the fall of 2007. w/ a meld of 20. Put in transplant list. Rx prednisone, cellcept, lasix , aldactone, lactulose. Have had 2 episodes of encephalopothy, which scared me to death. (no pun intended). Started to improve over 1 year. Now, off transplant list, with a meld of *!. Still on prednisone 5mg., and cellcept 1500mg/day. Cellcept is also used for lupus, which i was dx with in 2008. Good luck to you. It is a long journey... but sometimes it's not all uphill. Question: Does cellcept cause joint pain?i

Posted 1/19/2010 11:34 PM (GMT 0)
oops! that is a meld of 8. and i'm 47,

Posted 1/20/2010 5:35 AM (GMT 0)

You were placed on a transplant list with a MELD of only 8?  I thought one had to have a MELD in the 20s.

Hugs,

Connie

Posted 1/25/2010 3:19 AM (GMT 0)
No, I was on the list w/ a meld of 20 in 2007. Now, off list w/ meld of 8. I am concerned about taking these meds for so long, but they are working.
Posted 1/25/2010 3:21 AM (GMT 0)

Thanks for clearing that up, Ailsa.  Here's hoping the meds won't do any further damage.

Hugs,

Connie

Posted 1/26/2010 6:05 AM (GMT 0)
I have AIH but it is not active at the moment so I can go with out any drugs :)
But I do have some tissue damage to the liver.

I have herd of one women here in Iceland who had AIH and go cancer she went through bone marrow transplant or stem cell therapy I cant remember witch one but that cured her AIH
Posted 1/29/2010 7:04 AM (GMT 0)
idea I was diagnosed with "Autoimmune Hepatitis" approx. 3mo. ago.  Put on Prednisone and Imuran.   2 weeks after i was put on Imuran enzymes went back up.  Discontinued Imuran. Put on Cellcept.  Have been on Cellcept. approx. 4 weeks have been fine on this drug and have not had any side effects.
Posted 1/29/2010 4:42 PM (GMT 0)

Chinawoman, welcome to the forum!  I'm glad to hear that the Cellcept is working for you.

Best of luck to you!

Hugs,

Connie

Posted 4/18/2013 8:30 PM (GMT 0)
I hate bumping old threads, but I found this one while searching around the internet today. I figured I'd sign up and share my story.

I was diagnosed with AIH in May of 2009. I only went in because I had flu-like symptoms for about a month, and I noticed I was becoming very jaundice. My treatment started out with prednisone and immuran. I was on varying doses of those up until September 2012. At one point I was off of prednisone and on a very low dose of immuran, but that was very short lived.

In September, 2013, my liver numbers were through the roof, at 1500 and 600, respectively. That is nearly where they were when I initially went to the DR in 2009. My GI DR suggested I go to Mayo Clinic in Rochester, MN. Luckily, I live in MN, so that was an easy choice. I went down there for a good bit of testing to make 100% sure I had AIH and not something else, like Wilsons. Mayo conducted my third liver biopsy as well as a myriad of blood tests, unrine tests, and eye exams. Lots of poking and proding later, I was put on Cellcept. I've been on it now for about 3-4 months, and I'm tapering back my prednisone from the 60mg I was on when my numbers flared.

I'm anxious to be off of the prednisone for good. I hadn't noticed much for side effects of the prednisone until they put me on 60mg. I've developed weakness in my arms, and tremors when exerting myself. I wake up many times each night, and have trouble falling back to sleep. I used to be able to sleep forever and through anything. I've also noticed a bit of joint pain, specifically in my knees, ankles, and upper back. One of my shoulders has some pain, but I imagine that's still from my torn rotator cuff a few years back. One of the biggest things I hope will happen when I'm finally off the prednisone, is that my weight will come back down. I gained quite a bit of it when I was initially put on it, and I've never been able to get more than 10-20 pounds back off. I've even trained and ran a handful of 5ks last year, and I'm signed up for more of them this year.

Anyway, that's my story in a nutshell, and it's comforting to see that there are people dealing with the same things I am, and that Cellcept has been going well for you.

Thanks,
Tim

Post Edited (GettingOnWithIt) : 4/18/2013 2:33:44 PM (GMT-6)

Posted 4/19/2013 12:03 AM (GMT 0)
Hi, Tim, and welcome to the forum. We don't like new folks posting on old threads, either. So please copy your post and hit New Topic. Give it a name, then paste your post into your new thread. That way, more people will see it and respond. Meanwhile, I'll contact one of our moderators who has AIH.

Hugs,
Connie
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